New to this ,i got a sub total thyroidectomy 16 yrs ago,i am a 44 yr old male

I have had every symptom all you guys know about ,but what has made me angry is the fact I have trusted the nhs endos to give me proper info regards my bloods only to be told I have m.e ,i worked from I was 15 and for the last 3 yrs I have been bedridden most of the time and had to give up my job,last wk I felt as if I was dying with lots of symptoms ,got my bloods taken ,results tommorow, I came across dr peatfields book on the thyroid.I am now of the opinion I have been wrongly diagnossed and now I am not going to get fobbed off anymore.I have spent thousands on various treatments for m.e as I am desperate.I hope I can find some info of you guys to get myself better.

13 Replies

  • Hi and welcome aboard,

    Yes we are very good on info here but the trick is to act on the info that is given. I can't count the number of times info given to people on here has been disregarded and never acted upon only for those people to still be asking the same questions a year later.

    When you get your blood results ask for a print out and post them on here for people to comment - do that in the questions section as you will get a better response.

    So sorry you have been badly let down by your endo's and GP but with us you will gain the knowledge to be able to question, argue and dismiss their advice if necessary.

    Look forward to seeing your question tomorrow - what tests did you have done, was it just thyroid or others as well?

    Moggie x

  • Thanks for your reply,i got tsh and t4,if they come back normal what others should I ask for? I have had lots of test done before but always just trusted the endos and drs to do proper ones,i even paid to go to a private endo and his tests came back normal,but what I didnt know was that the private endo also works with nhs so I was jist throwing my money away.

  • What are your symptoms? and why do you think they are thyroid related? I haven't ignored your question but my answer depends on your symptoms.

    Moggie x

  • the 'normal' ranges for blood tests can be so wide that you can feel very ill with 'normal' levels. You need the numbers and the ranges so you can decide what 'normal' for you is. This site is a mine of information.

  • My symptoms are ,leg cramps ,ringing in my ears,shakes all over,fatigue,muscle spasms,cold hands and feet then sweaty clamy hands and feet ,headaches,crawling sensations under skin in legs ,sore joints,black bags under eyes,anxiety ,tingling in hands and feet.After reading some of dr peatfields book i believe that my adrenals are low too.

  • I also have poor memory and clumsiness

  • Well an awful lot of these are thyroid symptoms but a lot could also be down to certain vitamins being low. Have you ever had your B12, vitd, ferritin, folates and iron tested and if so do you have any results you can post on here.

    Are you taking any medication at the moment - I don't mean thyroid I mean for your supposed ME?

    Moggie x

  • I am on 100 mcg levo for thyroid and on esctalopram and cocodomol for m.ep,i used to be on propanlol for anxiety but I came off it as I had heard that it can make thyroid work less effective

  • So have you ever had the vitamins I mentioned tested? as if any of these are low they will be having a big impact on your thyroid medication and do you keep your thyroid meds four hours away from the other meds you are taking? and you do keep your thyroid meds two hours away from food?

    Sorry for all the questions but until I can get a clear picture as to what is going on and what might be wrong I can't advise you. It might be something simple that you are doing that could be the trouble or it might be an absorption or conversion issue.

    Moggie x

  • I assume your TT was for Graves /hyperthyroid

    What all doctors and endos fail to recognise is some old Swedish research which showed that after Graves Disease the body is so highly sensitised to thyroid hormone that after TT it can never again cope on "normal levels"

    Hence why my husband who was diagnosed by an enlightened Professor after similar years of suffering has written across his notes " treat on symptoms NOT on blood tests "

    When you get your results inc ranges post them here and we will help furthur

  • Thanks for your response ,sorry about delay but the nhs lab has lost my thyroid bloods ,have just had them retaken should have them on mon ,i have not had vit d or any other vits done but I got all others done I.e liver ,cell count ,bone ect my white cell count was marg high but doc said nothing to worry about

  • Shame on the Path Lab

    When you do get the results post them and we can make sense of them

  • Today is a new day - and the one to start your OWN recovery. Cast aside the anger at your mal-treatment and mis-diagnosis - most of us have a similar story. So start with a shopping list of all the things you need to have tested and keep on reading. Dr P's book is an excellent start. You have been given good advice by everyone...and as well as having the FAMOUS FIVE tested - as Moggies suggests - also have the FT3 and your Thyroid Anti-bodies checked - Anti-TPO and Anti-Tg. You may have Hashimotos. There are some simple Adrenal Tests you can do at home on before investing in Private Saliva Tests.

    So if you have been going privately you should have copies of your previous tests - have a look at them and see what was tested. Keep all copies of any bloodtests so you can start monitoring your own health and progress.

    Take a peep at my Profile if you want to know more about overcoming poorliness....

    Good luck on your journey...

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